Mom of toddler whose organs were donated meets baby with her heart

NASHVILLE, Tenn. (WSMV/Gray News) - The clock was ticking for a Tennessee baby with a failing heart, and time had already run out for a Kentucky toddler. But life continues for both because their paths crossed.

Patience Clouse was no different to most parents when they welcome a new baby into the world. She took videos and pictures of her son, Mark Jr., in the hospital, capturing his first moments of life, his first hiccups and their first hellos, WSMV reports.

“Hi, buddy,” said Clouse to Mark in one of those early videos. “He came out, and he cried. I was joyful that he made it here.”

That’s because as quickly as a new life begins, the universe reminds you it can end just as fast.

“His left side of his heart did not grow properly,” Clouse said, adding time was ticking for Mark. “He made it to about Christmas, and he started deteriorating.”

For nine months, Mark lived in limbo between life and death at Cincinnati Children’s Hospital, waiting for one thing.

“Organ donation. They said that was his only chance,” Clouse said.

Mark needed a new heart. His journey to find one took him from his home in Harrogate, Tennessee, to Corbin, Kentucky.

Denise Bargo doesn’t just walk with grief; she carries it with her everywhere she goes. In the car or the buggy at a grocery store, she carries a little brown box in memory of her little girl, Lena.

“This is my baby Lena in her little urn,” Bargo said.

Bargo recalled when she knew something was wrong with her daughter.

“Lena started throwing up and had a fever,” she said. “She went limp in my arms, and I gave her CPR. I gave her breath all the way to Corbin Hospital. I never stopped breathing for my baby.”

A shunt that was supposed to be flushing spinal fluid off Lena’s brain stopped working. Just months before her second birthday, the little girl was declared brain dead.

Bargo’s son, Cody Taylor, suggested the idea of organ donation, and the mother agreed. Video captured a rare and deeply personal moment that came next at Kentucky Children’s Hospital in Lexington. An honor walk is held when a patient prepares to donate their organs. Hospital staff lined the hallways to honor Lena as she was wheeled into the operating room. Bargo laid in the bed and held her the entire way.

Word spread quickly to Clouse at Cincinnati Children’s Hospital.

“Two of the transplant team doctors came in and said, ‘There’s a heart available,’” Clouse said. “I was speechless.”

On the same day that Lena was taken into the operating room, nurses paraded Mark down a hospital hallway lined with nurses, doctors and staff.

“We’ve all been waiting for this moment forever. We decided to give him a last parade before he went and got his new heart because it was his chance at a new life,” Clouse said. “It was the perfect timing; I don’t know if he would have waited much longer.”

Eventually, Bargo learned over Facebook that Lena’s heart went to Mark. Months later, the two families met, and Bargo embraced Mark the moment she saw him.

“Hi, precious baby, can I hold you? Thank you so much,” she said. “God’s little miracle! Can I feel your little heart beating? God is so amazing!”

Lena didn’t just save Mark. She saved her own mother, too.

“When Lena was in the hospital, I kept feeling like I was having a heart attack,” Bargo said.

As Lena was dying, doctors rushed Bargo to another floor where bloodwork found cancer. Doctors say they caught it early.

“Lena’s our little hero,” Bargo said.

In a way, Mark is a hero, too. He’s now the keeper of Lena’s heart.

“Mark’s alive because of Lena, but Lena’s heart is beating because of Mark,” Bargo said. “It’s a precious gift to know that my baby’s still alive.”

Lena’s organs also helped another baby and a grown adult.

The Bargos said they are hoping to spread awareness about hydrocephalus and shunts. Shunts don’t last forever. In fact, the Hydrocephalus Association reports that 40% of shunts in children fail within the first two years of placement.

According to the Denise Bargo, doctors said it would have been difficult to determine Lena’s shunt malfunctioned.

“The surgeon said unless you opened her brain up to look inside her, you would have never known that shunt malfunctioned,” said said.

Cincinnati Children’s Hospital lists several signs of a shunt malfunction. For infants, it includes a bulging fontanelle (soft spot), unusual vomiting, irritability, sun-setting eyes (when the white part of the eyes shows above the pupils), swelling along the shunt tract, lethargy (increased sleepiness) and seizures.

For toddlers, warning signs include vomiting, lethargy, irritability, headaches, swelling along the shunt tract and seizures.

Parents of school-aged children should watch for headaches, vomiting, lethargy, irritability, swelling along the shunt tract, abnormalities of eye movements, double vision, decreased school performance, periods of confusion and seizures.

If your child shows any of these symptoms, Cincinnati Children’s Hospital recommends seeking medical attention immediately. They warn one or two warning signs may be present at a time, but sometimes not all.

Anyone 18 or older, and in some states people even younger, can sign up to be an organ donor.

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